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Chia or KDM?

Discussion in 'ME/CFS Doctors' started by burgeo10, Jan 13, 2018.

  1. burgeo10

    burgeo10

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    Hi all,

    Having gotten back to 70-80% functioning during the latter half of '16 and the first half of '17, I crashed hard in July. My overwhelming fatigue returned for a week and then I became ill. The NHS in the UK tested me, and I was positive for infectious mononucleosis (so most probably EBV?). My ESR and C-reactive protein were high, and my iron was low. At the time I felt too ill to do further testing to be sure if I had "EBV" but its something I want to do now. My fatigue has not improved much if at all since July - so I have decided once and for all to devote all I have to getting better.

    I have seen Dr Bansal and Dr Weir in London. Dr Bansal put me on acyclovir 3 x 400mg a day, and Dr Weir did not have much advice besides continuing this treatment. I tried acyclovir for 2 months but it raised my liver enzymes, and I am waiting to see Dr Bansal to see if I should continue with it.

    At this point Im seeking advice on whether to see Dr Chia or KDM in Belgium? Obviously KDM would be much easier as its a train ride, whereas with Dr Chia I would have to fly to California to see him face to face (I would be willing to do this though if he was my best shot at recovery).

    In terms of clinical evidence for docs to work with I dont have too many abnormalities:

    weak smooth muscle antibody
    Low mannose binding lectin (21)
    Borderline low Vitamin D
    Borderline Serum Copper
    Borderline Ceruloplasmin
    Borderline Low salivary DHEA
    low free testosterone (normal total testosterone)
    High albumin
    High HDL

    I take:

    150 mg sertraline
    50 mg quetiapine
    100mg coq10
    50mg dhea
    2g l-carnitine fumarate
    2g pantothenic acid
    1g vitamin C


    Please if you have any advice re docs or treatment let me know :) `very interested in ARVs or a stronger AV like valtrex instead of acyclovir. Also if anyone knows of anywhere in the UK that does good viral testing please let me know. Thanks so much
     
  2. Hip

    Hip Senior Member

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    That seems quite low dose compared to Dr Lerner's protocol, which uses Valtrex 1,000 mg x 4 a day. Valtrex converts to acyclovir in the body.

    Those who don't tolerate acyclovir or Valtrex can try Famvir instead, which is better tolerated.



    Dr Chia is the go-to doctor if your ME/CFS is associated with chronic enterovirus infection. Unfortunately if you live outside of the US, it is hard to know if you have chronic enterovirus infection, because the only reliable lab blood tests I am aware of for chronic enterovirus are in the US. Although you could send a sample of your tissues from a stomach biopsy to Dr Chia's lab for chronic enterovirus testing. He charges $250 for that.
     
    Dechi likes this.
  3. Gondwanaland

    Gondwanaland Senior Member

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  4. burgeo10

    burgeo10

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    @Hip as I understand it Valtrex has greater bioavailability than acyclovir so 4 x 1000mg valtrex is much more powerful than what I am taking. I am considering calling Dr Chia's office on Monday to see if they can offer any help - perhaps I could get a stomach biopsy done in the UK and sent to him?

    @Gondwanaland I didn't know b5 depleted copper? I've never understood if Im actually high or low in copper. my nutritional doctor wanted me to take zinc as my hair copper was very high, coupled with low serum copper.
     
  5. Gondwanaland

    Gondwanaland Senior Member

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  6. Tammy

    Tammy Senior Member

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    MONO = EBV
     
  7. burgeo10

    burgeo10

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    @Tammy I know colloquially mono in the US is glandular fever in the UK, but I thought "infectious mononucleosis" can also be caused by CMV?
     
    Learner1 likes this.
  8. Tammy

    Tammy Senior Member

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    Not that I am aware of. Not to say though that a person couldn't have CMV as well as EBV. However mono is from the EBV
     
  9. Hip

    Hip Senior Member

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    Yes, Valtrex bioavailability is around 55%, whereas acyclovir bioavailability is around 15%, so Valtrex delivers much more acyclovir into the bloodstream.

    You have to get the stomach biopsy done yourself anyway, as Dr Chia does not offer this service. It just requires a gastroenterologist to put an endoscope down your throat and take some tissue samples. It is a painless procedure apparently. Dr Chia's test request form is found here (which includes instructions for the gastroenterologist). Though you might want to confirm with Dr Chia's office that he accepts biological samples from abroad. I think he does, but it's a good idea to confirm.

    Also you might want to check with UK couriers to ensure they can carry these samples. When I wanted to send my blood serum sample from the UK to a lab in the Netherlands, I found that the Post Office and all courier companies were not allowed to carry blood samples (unless they had a special agreement with the lab you are sending to).



    Mononucleosis / glandular fever can be cause by cytomegalovirus as well, though it is rarer. 90% of the time it is caused by EBV.
     
  10. burgeo10

    burgeo10

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    @Hip Thanks! that info is very helpful. As you're in the UK too can I ask which doctor you've found best? Im willing to try and consult with anyone at this point. Ive read the thread about Kaufman and Chheda and they seem to be having some success.
     
  11. Hip

    Hip Senior Member

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    I have never seen an ME/CFS doctor, mainly due to the dire lack of such specialists in the UK. KDM I considered going to, as he is just a Eurostar ride away, but with all the tests he orders, you end up paying around 2,000 euro. KDM often gives patients high doses of antibiotics where there are certain infections present.

    I instead spent a lot of time reading into the testing and treatment protocols used by the various ME/CFS specialist doctors (mostly located in the US), and then paid for a bit of testing myself, and tried out some of their treatments where appropriate. I actually compiled a document detailing these tests and treatments here: roadmap of chronic fatigue syndrome testing and treatment, if that is of any use to you.
     
    Sancar likes this.
  12. burgeo10

    burgeo10

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    @Hip that's a really great and helpful document - thank you! I always get confused about which AV does what - I'm going to call Quest laboratory tomorrow to see if they receive samples from abroad. If not I will try to find a lab in London that is vaguely if at all similar to test EBV titres.
     
    Hip likes this.
  13. Hip

    Hip Senior Member

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    I used The Doctor's Laboratory in London for my testing, though there may be other private labs. TDL do not offer any test that can be used for enteroviruses though (none of their enterovirus tests are sensitive enough to detect the chronic non-cytolytic enterovirus infections in ME/CFS).

    Though it is worth asking your GP if you can do viral testing through the NHS.
     
  14. burgeo10

    burgeo10

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    @Hip Thanks Hip. Do you happen to know if TDL give titre figures or just a positive/negative for antibodies. If Im going to pay for testing Its not just a postive/negative test. Thanks!

    NHS to be fair did a lot of hormone testing for me lately so may try for the viral testing!
     
  15. Hip

    Hip Senior Member

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    They give figures. Here are my TDL results just so that you can see:


    EPSTEIN-BARR VIRUS
    EBNA IgG antibody High Positive : 3.383 OD ..... (Pos = > 0.350)
    EBV Early Ag ab.(IgG) Negative: 0.250 OD ..... (Neg = < 0.350)
    EBV Early Ag ab.(IgM) Negative: 0.081 OD ..... (Neg = < 0.350)

    COMMENTS: Results suggestive of past (latent) EBV infection.


    HUMAN HERPES VIRUS-6 SEROLOGY
    HHV-6 IgG Ab. [By IFA] = Titre of 1:160
    HHV-6 IgM Ab. [by IFA] = Titre of 1:20

    COMMENTS: Results reflect a past [latent] Human Herpes virus-6 infection with no evidence of viral reactivation.
    Viral activity/reactivation is indicated if an IgG titre of >1:320 and/or IgM sero-positivity at a titre of >1:40 is demonstrated.


    CYTOMEGALOVIRUS
    Cytomegalovirus IgG Positive 7.0 IU/ml (Pos = > 0.4)

    COMMENTS: Suggest testing for specific CMV IgM to rule out recent infection.


    ENTEROVIRUS ANTIBODIES
    Coxsackie virus CFT [serotypes B1 - B6 & A9] : Negative
    Echovirus CFT [serotypes 4,6,9,14,24 & 30] : Negative

    COMMENTS: Significant antibody levels to the above were NOT detected.
    Paired testing of acute and convalescent specimens is recommended.


    HERPES SIMPLEX
    HSV-1 (IgG) : Positive (Index - 4.212)
    HSV-2 (IgG) : Negative (Index - 0.581)

    COMMENTS: The significance of this result depends on the clinical context. A rising antibody level is more significant. Suggest testing a second sample in 1-2 weeks.


    VARICELLA ZOSTER VIRUS
    Varicella Zoster (IgG) Positive: 1395.0 mIU/ml (POS = > 160)

    COMMENTS: Detection of Varicella Zoster IgG antibodies, in those with no characteristic Varicella rash, indicates previous exposure and present immunity to VZV.


    The above tests were taken several years after I caught the infection (likely coxsackievirus B4) which triggered my ME/CFS

    From my results, you can see I had high titers to cytomegalovirus. And also apparently to HSV-1 and varicella zoster, but I don't think there is much significance to that in ME/CFS; it's just EBV, HHV-6 and cytomegalovirus that I believe are considered important in ME/CFS (although there have been suggestions that varicella may play a role in ME/CFS).

    You can ignore my above negative enterovirus results by CFT (complement fixation), as CFT is totally insensitive to the chronic enterovirus infections found in ME/CFS. It is not worth taking a CFT enterovirus test, but I did not know that at the time.

    When I tested via an antibody neutralization test in the Netherlands, I had very high titers to coxsackievirus B4. (Unfortunately the test I took was discontinued by that lab, and I don't know of any lab outside of the US now that offers enterovirus antibody neutralization tests, the only blood test sensitive enough to detect enterovirus infections in ME/CFS).
     
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  16. burgeo10

    burgeo10

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    @Hip Thank you - Im interested is the EBV a VCA test? it seems EBNA, EBV VCA IgG and EBV VCA IgM would be the best to diagnose my levels of the virus. I see medichecks will do it for 79 pounds but I've heard they can be unreliable whilst I know TDL is well regarded.

    Shame that test in the Netherlands is no longer available.
     
  17. Hip

    Hip Senior Member

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    Dr A Martin Lerner says ME/CFS patients have an active EBV infection when there are elevated antibodies in the EBV IgM VCA test and/or the EBV EA diffuse test.

    As far as I know, I don't think EBV EBNA is considered important in ME/CFS; but I don't really understand the full complexities of EBV testing.
     
  18. Hip

    Hip Senior Member

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    It is possible that there is a lab in Greece offering a coxsackievirus B antibody neutralization test (they call it "seroneutralisation", which sounds like neutralization). I asked them about this, but they did not know whether it was neutralization or not, because the test is actually performed at another lab, the Hellenic Pasteur Institute.

    I have written to the Hellenic Pasteur Institute to try to find out more details, but so far no reply.
     
    Last edited: Jan 15, 2018
  19. Learner1

    Learner1 Forum Support Assistant

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    From the CDC website:
    However, as has been pointed out previously, there are abnormal presentations of EBV. Lerner's abortive replication and a deficient response - see attached.

    I would also recommend a PCR test to see if the DNA is there.

    My top ME/CFS doctor diagnosed me based on very high VCA IgG and a very high PCR when all other tests were negative...EBV is very sneaky and can do a lot of damage, so you want to know if you have it.
     

    Attached Files:

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  20. Hip

    Hip Senior Member

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    Thanks for the CDC info on EBV, @Learner1.

    As you mention, the sort of chronic active infections that appear to exist in ME/CFS are not the same as regular chronic active infection, which is why I think we need to defer to the viral tests and interpretations used by the main ME/CFS researchers, rather than any standard test interpretations for active EBV infection.

    There is such an illness as chronic EBV infection, it's very rare, but this is not the same as ME/CFS with high EBV titers. Incidentally, chronic EBV infection can be fully cured in a matter of days with rituximab. Whereas that does not work for ME/CFS patients with high EBV titers.


    For the benefit of @burgeo10, we should explain that Dr Martin Lerner's proposal was that in ME/CFS, there can be chronic active herpesvirus infections, but he believed these are not like regular chronic active infections, but are abortive infections, which are ongoing infections, but which rather unusually do not produce any new viral particles.

    There is not much evidence for this abortive infection theory of ME/CFS at present, but if this theory is true, it may explain why testing for chronic infection in ME/CFS requires a different interpretation of the viral test results, compared to regular chronic active infections. So this is why we look at the interpretations used by the ME/CFS clinician-researchers.


    For EBV, I have only been able to find Dr Martin Lerner's and Prof Jose Montoya's viral testing interpretation (which are available in their published studies). So these are the ones that I put in the roadmap document.

    I'd really like to know the herpesvirus tests and interpretations used by other ME/CFS clinician-researchers such as Dr Daniel Peterson, Dr Nancy Klimas, Dr Charles Lapp, Dr Andreas Kogelnik, etc, but have not been able to find anything via Google searching.



    In the case of enterovirus, Dr John Chia found that PCR testing is very hit and miss: even under the best conditions, he found that in patients with chronic enterovirus infections, blood PCR tests will only come out positive around 30% of the time, and the rest of the time it will be negative, even though the patient has a chronic infection. So PCR is not reliable for enterovirus.

    PCR may work better for herpesvirus, but I have not been able to find much info on it. I'd like to know more about how PCR is interpreted in ME/CFS patients with herpesvirus infections, but can't find any good articles or published studies on what PCR tests are used by ME/CFS clinician-researchers, and how they are interpreted.
     
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